Dementia)Palliative!Care!Resource!Nurse! Resource!Kit!!!

Transcription

1 Authors DrSharonAndrews AssociateProfessorFranMcInerney MsSusanLeggett MsCathyDonohue ProfessorAndrewRobinson Dementia)PalliativeCareResourceNurse ResourceKit August2011 FundedbytheAustralianGovernmentDepartmentofHealthandAgeing

2 Project(Team(( Project( Leader: Dr Michael Ashby, Professor of Palliative Care, University of Tasmania, Director of Palliative Care, Royal Hobart Hospital, and Honorary Fellow, WDREC, Menzies ResearchInstituteTasmania. Tas(manager:DrAndrewRobinson,ProfessorofAgedCareNursing,SchoolofNursingand Midwifery, and Co)Director, Wicking Dementia Research and Education Centre, Menzies ResearchInstituteTasmania. Vic((manager:DrFranMcInerney,AssociateProfessorofAgedCare,SchoolofNursingand Midwifery, Faculty of Health Sciences, ACU/Catholic Homes and Honorary Associate, WickingDementiaResearchandEducationCentre. Project(coordinator:DrSharonAndrews,ResearchFellow,WickingDementiaResearchand EducationCentre,MenziesResearchInstituteTasmania. Evaluation( specialist: Dr Christine Stirling, Senior Research Fellow, Wicking Dementia ResearchandEducationCentre,MenziesResearchInstituteTasmania. Expert(consultancy:DrChrisToye,AssociateProfessor,OlderPersons HealthCare,Curtin UniversityofTechnology,AdjunctSeniorLecturer,SchoolofNursingandMidwifery,UTAS. Tas(Project(officers:MsSusanLeggett,ResearchAssociate,WickingDementiaResearchand EducationCentre,MenziesResearchInstituteTasmania. Vic(Project(officers:MsCathyDonohueandMsMichelleMorgan,ResearchAssistants,Aged Care,SchoolofNursing&Midwifery,FacultyofHealthSciences,ACU Research( Assistant: Mr Carl Higgs, Research Assistant, Wicking Dementia Research and EducationCentre,MenziesResearchInstituteTasmania. Acknowledgements( ThedevelopmentofthisresourcewasfundedbytheAustralianGovernmentDepartmentof HealthandAgeing,LocalPalliativeCareGrantsProgram,RoundFive. For further information please contact Dr Sharon Andrews, Project Co)Ordinator:

3 Contents( Introduction...4 Aboutthisresource Settingup...8 1a.Establishpartnershipwithknowledgetranslationcollaborators...8 1b.ConsiderbarriersandenablerstoestablishinganddevelopingtheDPRNprogram.9 1c.DPRNrecruitment DPRNpreparation Buildingsupportandengagement a.ActionGroups b.PracticeDevelopmentNetwork c.Awarenessraising...16 Attachments...17 References...21 ( ( (

4 Introduction( In Australia over half(53%) of the people living in Residential Aged Care Facilities(RACFs) have sometypeofdementia. 1 Ofthesepeople,87%require high)level care. 2 Itisestimatedthatin 2008)09around88%ofresidentsseparatedfromAustralianRACFsviadeath,arisefrom78%in 1998)99. 1 ThesestatisticsreflecttheincreasingacuityofresidentsinRACFsoverthepastdecade. Duringthisperiodoftimetherehasalsobeengrowingrecognitionintheliteraturethatdementia isaterminalcondition. 3)4 A palliative approach to care is advocated as a framework to enhance quality of life for people withadvanceddementia,alleviatedistressingsymptoms,andavoidunnecessaryandburdensome hospitalizations and associated medical interventions. 5)8 A palliative approach is proactive and responsive to the needs of people with any life)limiting or life)threatening illness and their caregiver/family and focuses on holistic assessment and care provision, that acknowledges the physical,psychological,social,andspiritualdimensionsoftheperson Apalliativeapproachis predicated on the open acknowledgement of dying and death as an integral part of life. 5 For people with advanced dementia, its implementation is facilitated by family and health care professionalsrecognizingthatdementiaisaterminalcondition 3 38 andengagingincollaborative andproactivediscussionsabouttheperson scondition,prognosisandfuturewishesforcare. 10)12 Since the 1990s there has been a greater recognition of the need to improve the provision of palliative care for people with non)malignant conditions such as dementia. The development of theguidelinesforapalliativeapproachinresidentialagedcarefacilities 39 demonstratesmore focused attempts to integrate a palliative approach within RACFs. However, the translation of evidence into practice to improve the provision of palliative care for people with dementia is complexandagedcarestafffacearangeofcontextualchallenges.forexample,inresidentialaged carefacilities(racfs),staffplayapivotalroleininitiatingdialogueswithfamilycaregiversabout the dementia trajectory, advance care planning and end of life care planning. However is both complex and challenging for RACF staff. 13 There is evidence that RACF staff require further education around key aspects of dementia and related principles of contemporary palliative care. 7,14)15 Moreover, staff have reported feeling unprepared to discuss with family caregivers issuesaboutdeathanddyingforresidentswithdementia. 14,7 Oneapproachtoaddressingissuesofstaffcapacitytodeliverevidence)basedapproachestocare has been the establishment of a clinical champion role in RACFs. 16)19 This role has also been referredtoasa linknurse or resourcenurse. Alinkorresourcenursehasbeendescribedasanindividualinacareenvironmentwho,supported byotherpractitioners(forexample,clinicalnursespecialists),willbeabletoactasalocalresource anddisseminateinformationandlearningwithinthesetting. 18 Thistypeofrolehasbeenusedin otherresearchtoenhanceevidence)basedpracticeacrossanumberoftargetareas(e.g.,wound care,infectioncontrol,palliativecare,painmanagement). 17)18,20)24 Linknursesmaybesupported by members of a specialist care team or service. Hence the link nurse is an important intermediary, providing two)way communication between the specialist team and their own clinical area. 20,22 Through these connections with specialist services, the link nurse role has a primaryaimofenhancingclinicaleffectivenessandevidence)basedpracticewithinagivenarea. 21 Staff members taking on this role should have knowledge of the area, be able to support and 4

5 educateotherstaffandbeinapositiontoimplementchange. 23,25 Ithasbeensuggestedthatthe linknursemodelisaneffectivestrategyforthedisseminationofinformationtoandeducationof nursingstaff. 18,22,24 Inthecontextofdementiacareandpalliativecare,linknurseinitiativeshave beensuggestedbyanumberofstudiestofosterknowledgetranslationwithinlocalsettingsand supportanevidence)basedchangeagenda. 17)18,22)23,26 TheDementiaCareDialoguesProject ThisResourceKithasbeendevelopedasanoutcomeofaresearchprojecttitledDementiaCare Dialogues(fulltitle:Openingadialogue:Improvingcommunicationandpracticeinadvancecare and end of life care planning). The Dementia Care Dialogues project was conducted across four RACFs,twoinTasmaniaandtwoinVictoria.Theoverarchingaimoftheprojectwastoimprove communication between Residential Aged Care Facility (RACF) staff and family caregivers about dementia as a terminal condition, a palliative approach and issues related to advance care planning. The development of a Dementia Palliative careresource Nurse (DPRN) role in each participating RACF was a key intervention of the project. For further information about the project,logontohttp:// The DPRN role was based on a link nurse model, however we chose the term Dementia PalliativecareResourceNurse ratherthan linknurse foranumberofimportantreasons.firstly, ourprojecthadanexplicitfocusonbuildingcapacityandenhancingin)houseexpertiseofkeystaff members who had identified themselves and/or been identified by management as potential clinicalleaders.theprincipalroleofthedprnswastobealocalresourcepersonattheracfin the area of palliative care for people with dementia. Hence, this role was best captured by the term resourcenurse.whileanimportantaspectoftherolewastobuildnetworkswithspecialist palliative care and aged/dementia care services which certainly resonates with descriptions of other linknurse roles ourprogramwaslargelypredicatedontheresourcenursesengagingina process of knowledge translation with professionals who had expertise in this area. Hence, the resourcenursewasakeyplayerinthe translationalspace. 5

6 TheDPRNroleinsummary Insummary,theDementia PalliativecareResourceNurse: aims to enhance clinical effectiveness and the implementation of research findings in clinicalpractice; actsasalocalresourcetodisseminateinformationandlearningwithinthesetting; issupportedandfacilitatedbymembersofaspecialistcareteamorservice;and providestwo)waycommunicationbetweenthespecialistteamandtheirownclinicalarea. Figure1 adiagrammaticrepresentationofthedprnrole. Practice Research RACFstaff Family Members Residents DPRN Knowledge Translation Collaborators GPs RACF Management 6

7 About(this(resource( This Resource Kit has been designed as a guide to aid the implementation of the DPRN role in ResidentialAgedCareFacilities(RACFs).ItisastartingpointforRACFstaffwhowishtoimplement this role in their facility. Preparation is crucial to setting up this role and in recognition of this importantfactor,thisresourcedetailsthreekeystepsinestablishingadprnrole(seefigure2). Figure2 ModelforestablishingtheDPRNrole 1.(SeGng(up( 2.(DPRN( recruitment(&( preparalon( 3.(Building( support(&( engagemnet( Establishpartnershipswithknowledgetranslalon collaborators. DevelopMOU KnowthebarriersandenablerstoDPRNroledevelopment DevelopaposilondescriplontheDPRNrole. PromoteawarnessoftheDPRNposilonandanlcipated benefitsoftherole. CallforEOIsandrecruitDPRN DPRNeducalon DPRNestablishesfacilityaclongroups EstablishpraclceDevelopmentnetwork Awarenessraising 7

8 1.(Setting(up(( 1a.Establishpartnershipwithknowledgetranslationcollaborators AsafirststeptosettingupaDPRNroleinaRACF,acollaborativepartnershipbetweentheaged careorganisationandaknowledgetranslationagencysuchasauniversitydepartment,whichhas the capability to support aged care providers to develop evidence)based practice, should be established.thedevelopmentofaformalisedpartnershipshouldideallyinvolveamemorandum of Understanding (MOU). The MOU should clearly establish how the partnership will practically functionalongwitheachparty sresponsibilities. BelowaresomesuggestedexpectationsforagedcareprovidersinsettingupaDPRNrolewhich couldbeincludedinanmou: SupportforthenominationofasuitablestaffmembertoassumetheDPRNrole. FacilitateDPRNtoattendanceateducationsessions(viarostering,backfill,etc.). SupportDPRNtocollectdatatoidentifyeducation/trainingneedsofRACFstaffwithwhomthe DPRNwillwork. SupportforDPRNtoundertaketheirrolethroughregular quarantined timeeachweek(e.g., viarostering,fundedtime). Support engagement of the DPRN with knowledge translation collaborators to implement evidenceintopractice. Support the DPRN to establish action group(s) of interested staff to assist in knowledge translationactivities(e.g.provideavenueformeetings,assistwithrosteringsothatstaffcan attendmeetingswithdprn). Supportthedevelopmentofcross)sectoralcommunicationandrelationshipbuildingtostrengthenthe sustainabilityofthedprnrole. AgreeuponacommunicationstrategywiththeDPRN Some suggested expectations for the agency with expertise in knowledge translation would include: Provideacontactperson(s)toworkwiththeDPRN,whohasexpertiseinaged/dementiacare andknowledgetranslationtosupportthedevelopmentofstrategiestobuildevidence)based practice palliative care for people with dementia (e.g: staff education, mentoring, cross) sectoralstakeholderengagement,resourcedevelopment). Facilitate the DPRN to access to evidence)based information relevant to their role development. Provide preparatory education for the DPRN about dementia, palliative care and knowledge translation. ProvidetheDPRNwithassistancetoanalyselocaldatatoidentifyeducation/trainingneedsofstaff andotherstakeholders. 8

9 1b.ConsiderbarriersandenablerstoestablishinganddevelopingtheDPRNprogram When setting up a DPRN program it is important to be aware of the potential barriers and enablerstoestablishingthisrole.thiswillhelpwithselectingtherightpersonforthepositionand setting up conditions within the program to support the role. Consideration of the barriers and enablers with respect to the local circumstances is paramount to setting up a program that will havean organisationalfit.inthissection,thebarriersandenablersidentifiedintheliteraturein relationtolinknurseprogramsandfromourexperienceareoutlined. Enablers Box1:SummaryofEnablers Personaltraits(e.g.,motivation,enthusiasm,desiretoimproveskillsandpractice) Clarityofrolesandresponsibilities Clearlyarticulatedmanagementexpectationsoftheposition Formalisedresourcenurserolewithpaidtime havingquarantinedtime Managementsupporttoattendeducationinitiates Managementsupportthatfacilitatestheroledevelopment Pathwayforcareeradvancement Theimportanceofpersonalityandanumberofattitudesofthoseundertakingaresourcenurse rolehasbeenemphasized. 25 Theseincludebutarenotlimitedto: apersonalinterestinthearea(e.g.,dementiaandpalliativecare); adesiretoimprovethepracticeandskillsofbothselfandcolleagues; motivationandenthusiasmfortherole; findingtheareaofworktobearewardingandrelevant; aninterestinextendingprofessionalpractice;and personaltraitsofbeingapproachable,agoodlistener,assertive,empathetic,open)minded, non)paternalanddiplomatic. Clarity of roles and responsibilities for the staff member taking on a resource nurse role is also important for successful implementation. 31 Hence it is invaluable to provide a detailed position descriptionthatoutlines: rolesandresponsibilities; expectedworkhours;and expectationsfrommanagementfortherole. The timing of educational initiatives around shift)work is another important enabler to the developmentoftheresourcenurserole 21 thatiscentralinmaintainingthelinknurseparticipant s motivation.thelocationofeducationsessionsin,orcloseto,theworkplacehasbeenfoundtoaid attendanceandsuccessoftraining. 22,32)33 9

10 Management support for the establishment and development of the role is crucial to its implementation.hence,forlong)termsuccessoflinknurseprogramsthelinknurseroleneedsto be formalised, with allocated paid time for the duties involved, and a clear pathway for career advancement. 31 DPRNperspectivesontheimportanceofmanagersupport TheDirectorofCare [has]alwaysbeensupportive hasbeenexcellent she sveryapproachableandshe salwaysreallyputherselfout...[x] wouldbemyfirstportofcallandshe sbeen[a]greatsupport. OurevidencestronglyindicatesthataDPRNshould: BeaRegisteredNurse; Havealevelofseniorityorauthoritywithinthefacility,ideallyinaseniorclinicalrole,and functionasaclinicalleaderintheracf; Havepreviousexperienceworkinginagedcare; Havetheabilitytosupportcollaborativepartnerships;and Havequarantinedtimetoundertaketherole. Barriers DPRNperspectivesonhavingallocatedtimefortheirrole: IhadadesignateddayasaDPRNandIthinkthatreallyyouneed it Youputonthat hat forthedprnrole...andstaffknow[yourinthat rolefortheday] Idon tknowhowpeoplecandoitiftheydon thave quarantinedtime (DPRN1) Youloseconcentration[withoutallocatedtime] Itistotallydifficult not beingableto keepthatcontinuity(dprn4) Studieshavereportedanumberofbarriersthatmayimpedethesuccessofalinknurseprogram. Thesebarriersarehighlyrelevanttotheestablishmentofaresourcenurseprogramandsomeof themostrelevantbarriershavebeenoutlinedhere.asignificantbarriertoimplementation,which hasbeenwelldocumented,isalackofmanagementsupport. 17)18,22)23,26 Managementsupportis crucialtothepromotionoftheroleanditsimportantinthefacilityaswellasprovidingpractical assistancesuchasallocatedpaidtimeforpeoplewhoaretakingonresourcenurseorlinknurse duties. 17,22,27,30 Withouttheseprovisions,thereisariskthataresourcenurserolemightbeseenas anotherduty withlittlereward,havinginsufficientallocatedtimeandlowstatus. 27,31 Staff shortages have also been well documented as a barrier to the staff member being able to effectively engage in a link nurse type role, as well as to being released to attend education sessionsthatcouldcontributetothedevelopmentoftheirrole

11 The (lack of) confidence of link nurses to assume a teaching and mentoring role has also been documentedasabarrier. 17 Further,territorialissuesbetweendifferentstaffmemberscanbea barriertothedevelopmentoftheresourcenurserole. DPRNaboutimpactofmanagerialsupport: Idon thaveaverysupportivedirectorofnursingandithinkyouneed tohavestrongleadershipfrommanagementatthetopleveltoreally promotetheroleifeellikei ve [had]lowprofile Ithinkifyouhada supportiveandstrongmanagerwhowouldreallypushtheroleithink thatwouldbecertainlyaplus.(dprn1) Box 2 contains a summary of the barriers likely to be encountered when setting up a DPRN program,andstrategiestoaddresseachofthesebarriersaresuggested. Box2:SummaryofBarriersandStrategies Barrier Lackofmanagerialsupport Strategies Managerialsupportisapreconditionforprogramestablishment. Haveasetofexpectationsformanagementsupportofthe program.(outlinedinsection1ofthisresource) Managementinvolvedinprogramdesignanddelivery. Territorialissueswithother professionals Lackoftime Lackofstaffinterestorconfidence bydprn Inadequatepreparationforrole Feeling snowedunder Resistancebyothersordifficulty establishingcollaborationswith othersectors Staffturnover/Transiencethrough therole Clarityaroundroledefinition Focusoncollaborationwithotherhealthprofessionalaspartof thedementia/palliationagenda Quarantinedtime paid. Staffmembermusthaveaninterestinthearea andnotbe volunteered bymanagement. Capacitybuildingactivities(includingeducationandpreliminary preparation)needtobebuiltintotheresourcenurseprogram (seesection2ofthisresource). SetupasupportgroupattheRACF,considerassistant/deputy DPRN. Promotionofbenefitsoftherole,clarificationofroleand responsibilities. Developmentofrelationshipsmaynecessitateamemorandumof understandingorsomeothertypeofagreement. SetupanactiongroupofRACFstaffwhichwillworkwiththe DPRN. Considerappointinganassistant/deputyDPRNsothatifthe DPRNisunabletocontinueintherole,therewillbesomeone whocantaketheirplace 11

12 1c.DPRNrecruitment Recruitmentofastaffmember(s)fortheDPRNroleshouldbeapproachedasastrategicactivity within the organisation designed to enhance evidence)based practice. Recruitment of a DPRN shouldincludethefollowingactivities: Raiseawarenessabouttherole(seeAttachment1). Provide staff with a position description (see Box 2) and any other supporting informationaboutthedprnrole, CallforExpressionsofInterest(EOI)fromstaffmemberswhohaveadesiretotakeon thisrole(seeattachment2forexampleofaneoi). Undertakeaformalselectionprocess. DependingonthenumberofstaffthatsubmitEOIsfortheDPRNrole,anactiongroupwhichwill supportthedprncouldalsobeestablished.theenthusiasmofthosestaffmemberswhoarenot successfulinobtainingthedprnpositioncanbeharnessedearlybyformingsuchagroup.thisis one potential strategy to address issues of staff transience through a resource nurse role (as highlighted in Box 3). Box 3 contains a DPRN position description, which RACFs could use as a guidetoselectingastaffmembertoassumearesourcenurserole. Box3:DPRNPositionDescription DesiredattributesofstaffmemberfillingtheDPRNrole: QualificationasaRegisteredNurse(minimum0.5FTE) thestaffmemberneedstohave alevelofauthoritytoimplementandfosterchangeataunitlevel. EmploymentinparticipatingRACFincurrent(permanent)position. Minimumof12monthsexperienceinresidentialagedcare. Haveakeeninterestindementiaandpalliativecare. Abilitytocommunicateandcollaborateeffectivelywitharangeofagedcarestaffand otherprofessionals. Aninterestinevidence)basedpractice. Abilitytoinitiateanddriveevidence)basedactivitiesinthefacility(e.g.,education programme) EnthusiasmandadesiretomentorotherRACFstaff Commitmentandstrongmotivationtoimprovetheprovisionofqualitypalliativecare forpeoplewithdementia ExpectationsforcommitmenttoandengagementoftheDPRN: Undertakeroleforonedayperweek(funded) Undergoaneducationprogrammefocusingonpalliativecare,dementia,evidencebased practiceandchangemanagement Committoengageindementia/palliativecareclinical)andeducation)focusedactivities 12

13 2.(DPRN(preparation( TheDPRNroleneedstobeunderpinnedbyeducationandresourcestoensurethatthenursehas thenecessaryknowledgeandsupporttoundertaketherole.intermsofpreparingstaffmembers totakeonaresourcenurserole,capacitybuildingactivitiesarecrucialandtheseshouldinclude: DPRNpreparatoryeducationprogram,and DPRNsupportnetworks. DPRNpreparatoryeducationprogram TopreparetheDPRNfortheirroleitwillbenecessarytoprovidethemwitheducationaboutthe role itself, as well as the evidence around dementia, palliative care and principles of knowledge translation. For example in the Dementia Care Dialogues project the following areas were addressedinanintroductorytwo)dayeducationprogramfordprns: Demographicsofanageingpopulation DementiaandincreasingdependencyinRACFs Introductiontopalliativecareandapalliativeapproach ApplicabilityandbenefitsofapalliativeapproachforpeoplewithdementiainRACFs Communication strategies to facilitate a palliative approach to care for people with dementiainracfs TheDementia PalliativecareResourceNurserole Translationofevidenceintopractice Principlesofchangemanagement DPRNperspectivesontheimportanceofeducation I suppose, now that I ve done the education and I ve read a lot of literature, I know what I m saying is right as well. So I ve got the evidenceisuppose,tosay, Yes,Iknowthisisright (DPRN1) Ifelt more confident[inthe DPRNrole]because I wasmore educated andithinkthateducationisoneofthemajorthings(dprn4) 13

14 3.(Building(support(and(engagement(((( 3a.ActionGroups Establishingagroup(s)ofpeopletosupporttheDPRNiscrucialtoensurethattheydonotbecome isolatedwithintheirrole.aspreviouslyhighlighted,anactiongroupofracfstaffisonestrategy that can be used. An action group should comprise staff members who have an interest in dementiaandpalliativecare(asdiscussedearlier,theycouldbepeoplewhoappliedforthedprn role)andwhowillworkwiththedprnandtheircolleaguestoimprovepracticeinthisarea. GuidanceonsettingupActionGroups There is no one correct way to establish an action group, however, there are some important questionsandguidingprinciplesthatshouldbeconsidered: Whowillcomprisetheactiongroup? A diversity of members will better equip the group to share a range of perspectives, identify problems for different stakeholder groups and share knowledge and skills to develop innovative solutions. There is no one ideal participant, however it is important that staff member have an interestindementia,palliativecareandevidence)basedpractice.forthegrouptobesuccessful staffmemberswillalsoneedtobeopenandenthusiastictoexploringwaysthattheirpracticescan bechangedandimproved. Howwillmembersoftheactiongroupberecruited? TheestablishmentofanactiongroupshouldideallybeledbytheDPRNandinvolveliaisonwith facilitymanagement.highlevelbuy)infrommanagementisimportantforresourcingandsupport fortheactiongroupandreinforcestheimportanceofdprn)ledinitiatives. Whilepotentialmemberscanbeaccessedinavarietyofdifferentways(e.g.onrecommendation from management, participants in interest groups and other committees) it is essential that potentialparticipantshaveadesiretobeinvolved,ratherthanbeing volunteered bysomeone else. If staff feel like they have no choice but to be involved, it is less likely that they will be committed to the process. Invitation flyers/posters, highlights in newsletters, and public invitationsinstaffmeetingsaresomesuggestedmethodsofalertingstaffabouttheformationof anactiongroup.expressionsofinterestshouldbesoughtfromstaff(rns,ens,ecas,andlifestyle andleisureofficers)whowishtoparticipate. Whatdoparticipantsneedtoknowpriortomakingadecisiontobeinvolved? Working as part of an action group isan interactive process that at times can involve intense periodsofworkbygroupmembers.participantsneedtobeinformedthattheywillbecommitting toworkaspartofagroupoverasustainedperiodoftime.itisalsoimportantthatparticipants knowthattheywillbepartofaknowledgetranslationprocesswhichreliesonparticipation. 14

15 Preparationiscritical: Actiongroupmemberswillalsoneedpreparationtoundertaketheirrole.Thispreparationshould be undertaken in conjunction with people who have expertise in knowledge translation and should familiarise the group members with the current evidence supporting the provision of a palliativeapproachforpeoplewithdementiaandtheirfamilymembers;principlesofknowledge translation;recognisingbarriersandenablerstoknowledgetranslation;andknowledgetranslation strategies. Additionally, there are a number of questions which the DPRN should consider with the action group members to plan how group meetings will occur and information will be communicated, suchas: Whataretheobjectivesofthegroup? HowoftenwillthegroupmeetwiththeDPRN? Howwillgroupmemberscommunicatebetweenmeetings? Howwillthegroupmemberscommunicatewithotherstaffinthefacility? 3b.PracticeDevelopmentNetwork In addition to setting up facility action groups, the establishment of a practice development network (PDN), which comprises professionals from aged care, palliative care and dementia specialistservicesisanotherimportantsourceofsupportforadprnandfordprn)drivenpractice changewithinracfs.ideally,thepdnisacollaborativeandself)drivengroup.pdnmembersare also likely to benefit from the DPRN and action group members sharing of their hands)on experienceinthefacility. APDNwouldberesponsiblefor: CollaboratingwithandsupportingtheDPRNsintheirrole. AssistingtheDPRNstoaccessrelevantevidence(includingbestpracticeguidelines(BPGs)) andexperience. ProvideexpertclinicaladvicetosupportknowledgetranslationintheRACF. Box4containsanexampleofthetypeofmembershipforaPDN. Box4:ExamplesofPracticeDevelopmentNetworkmembership Representative(s)fromspecialistpalliativecarenurses Representative(s)fromaspecialistgeriatricsservice Advanceplanningnursespecialist RepresentativefromDementiaBehaviourManagementAdvisoryService 15

16 3c.Awarenessraising ThisfinalsectionoftheResourceKitprovidessomeexamplesofawarenessraisingstrategiesthat DPRNsandactiongroupscanundertaketointroducetheDPRNroletostaffandshareevidence) basedinformationaboutissuesrelevanttoprovidingpalliativecareforpeoplewithdementia: DevelopaDPRNExpressionofInterestForm seeattachment1. Develop an introductory letter or memo for staff about the DPPRN role see Attachment2. DPRNnewsletterregularlydistributedtoRACFstaff seeattachment3. Workingwithotherstaffasamentorandrolemodel Informally raising the profile of palliative care for people with dementia through conversationswithcolleagues Sharing evidence)based information with staff and other stakeholders (e.g. family members) related to dementia, palliative care or advance care planning this could includesourcingandsharingrelevantexternalresources,suchastelevisionandradio programmes, educational DVDs and information posters. See Attachment 5 and Attachment6forexamplesofinformationposters. Facilitatingorconductingeducationforcolleagues 16

17 Attachments( Attachment1:DPRNexpressionofinterestform YouareinvitedtoconsiderapplyingtobetheDementia PalliativeCareResourceNurseforyourfacility. TheselectioncriteriaforDPRNswillincludethefollowing: QualificationasaRegisteredNurse EmploymentinparticipatingRACFincurrent(permanent)position. Minimumof12monthsexperienceinresidentialagedcare. Haveakeeninterestindementiaandpalliativecare. Abilitytocommunicateandcollaborateeffectivelywitharangeofagedcarestaffandother professionals. Aninterestinevidence)basedpractice. Abilitytoinitiateanddriveevidence)basedactivitiesinthefacility(e.g.,educationprogramme) EnthusiasmandadesiretomentorotherRACFstaff Commitment and strong motivation to improve the provision of quality palliative care for peoplewithdementia Ifyouwouldliketobeconsideredforthisrole,pleaseprovideyourcontactandotherdetailsbelow Name: Presentrole: Qualifications: Telephone: Thankyouforyourinterestandpleasereturnthisformto[insertdetailsoffacilitycontactpersonhere] 17

18 Attachment2:Exampleofintroductorystaffmemo JaneDoeisourDementia PalliativecareResourceNurse JaneisournewlyappointedDementia)PalliativeCareResource Nurse(DPRN). Herroleisto: Support staff to provide best practice in a palliative approachforpeoplewithdementia, Exploreyoureducationalneeds, Shareevidence)basedinformationandresourceswithstaff, Workwithandsupportotherstafftoimplementapalliativeapproachtocareforpeople withdementia. JanewillbeworkingastheDPRNeveryMonday,butavailableforcontactatothertimes. Jane scontactdetailsarexxxx Attachment3:ExampleDPRNNewsletter DementiaCareDialogues NewsletterNo.1 3rdAugust2011 Bonnie and Clyde attended the Dementia)Palliative Care ResourceNurse Education Program held at the MenziesCentre,HobartonMondayandTuesdaythis week. Thesessionscoveredthecontextandbackgroundto the project, Palliative Care, the Dementia)Palliative Care Resource Nurse (DPRN) role and collaborative research. DPRNs attended from two Residential Aged care Facilities(RACF)inHobartandtwoinMelbourne. We had many opportunities to talk about our own workplaceandstarttotalkabouthowwewillinvolve everyoneinmovingtheprojectforward. Asyouknow, wehave formedan Action Group and fromhereonyouwillbehearingmuchmorefromthe group about the project and the changes we are goingtoimplement. Wereallyhopeyouwillbecomeasenthusiasticaswe are,sopleasecomeandseeusformoreinformation, suggestionsorifyouhave any problemsyouwantto discuss. Watchthisspaceforregularinformationsharingand updatesonourprogress. 18

19 Attachment4:Exampleinformationposter1 19

20 Attachment5:Exampleinformationposter2 20

21 References( 1 AustralianInstituteofHealthandWelfare.2010.ResidentialagedcareinAustralia2008d09:A statisticaloverview.canberra:australianinstituteofhealthandwelfare. 2 AustralianInstituteofHealthandWelfare.2011.PathwaysinAgedCare:programuseafter assessment.datalinkageseriesno.10.csi10.canberra:aihw. 3 Robinson,A.,L.Venter,S.Andrews,K.Cubit,B.Menzies,L.Jongeling,M.Fassett&C.Mather BuildingConnectionsinAgedCare:DevelopingSupportStructuresforStudentNurseson PlacementinResidentialCare FinalReport.Hobart:UniversityofTasmania. 4 Mitchell,S.L.,J.M.Teno,D.K.Kiely,M.L.Shaffer,R.N.Jones,H.G.Prigerson,L.Volicer,J.L. Givens, and M. B. Hamel "The Clinical Course of Advanced Dementia." N Engl J Med 361(16):1529)38. 5 DoHA.2006.GuidelinesforaPalliativeApproachinResidentialAgedCaredEnhancedVersion. editedbydepartmentofhealthandageing.canberra,act:departmentofhealthandageing. 6 Hansen, E., C. Hughes, G. Routley& A. Robinson 'General practitioners experiences and understandings of diagnosing dementia: Factors impacting on early diagnosis, Social Science&Medicine,vol.67,pp.1776) Mitchell, S., D. Kiely, and M. Hamel "Dying with Advanced Dementia in the Nursing Home."ArchivesofInternalMedicine164(3):321)26. 8 Sachs,G.,J.Shega,andD.Cos)Hayley.2004.Barrierstoexcellentend)of)lifecareforpatients withdementia.jgeninternmed.19(10):1057) PalliativeCareAustralia.2005.PalliativeCareQualityResourceGuide:AToolkit.DeakinWest: PalliativeCareAustralia. 10 Caron,C.D.,J.Griffith,andM.Arcand.2005."DecisionMakingattheEndofLifeinDementia: How Family Caregivers Perceive Their Interactions with Health Care Providers in Long)Term) CareSettings."JournalofAppliedGerontology24(3):231) Addington)Hall, J. M., & I. Higginson Palliative care for nondcancer patients. Oxford: OxfordUniversityPress. 12 Hughes, J.C., K. Hedley, D. Harris The practice and philosophy of palliative care in dementia. NursResCare6(1): Shanley, C., and E. Whitmore Preparing for EnddofdLife in Residential Aged Care : ResearchProjectReport.Sydney:AgedCareResearchUnit,LiverpoolHospital. 14 Chang,E.,J.Daly,A.Johnson,K.Harrison,S.Easterbrook,J.Bidewell,H.Stewart,M.Noel,and K.Hancock.2009."ChallengesforProfessionalCareofAdvancedDementia."IntJNursPract 15(1):41)7. 15 Allen, S., M. O'Connor, Y. Chapman, and K. Francis "The Implications of Policy on DeliveringaPalliativeApproachinResidentialAgedCare:RhetoricorReality?"ContempNurse 29(2):174)83. 21

22 16 Maddocks, I Palliative Care Nurse Practitioners in Aged Care Facilities: Report to the Department of Human Services. Daw Park, SA: International Intstitute of Hospice Studies, FlindersUniversityofSouthAustralia. 17 Hasson, F., W. G. Kernohan, M. Waldron, E. Whittaker, and D. McLaughlin "The PalliativeCareLinkNurseRoleinNursingHomes:BarriersandFacilitators."JAdvNurs64(3): 233) Froggatt, K. A., and L. Hoult "Developing Palliative Care Practice in Nursing and ResidentialCareHomes:TheRoleoftheClinicalNurseSpecialist."JClinNurs11(6):802)8. 19 Chang, E., S. Easterbrook, K. Hancock, A. Johnson & P. Davidson Evaluation of an Information Booklet for Caregivers of People with Dementia: An Australian Perspective. Nursing&HealthSciences12(1):45)51 20 Phillips,J.L.,P.M.Davidson,D.Jackson,andL.J.Kristjanson.2008."Multi)FacetedPalliative CareIntervention:AgedCareNurses'andCareAssistants'PerceptionsandExperiences."JAdv Nurs62(2):216) Roberts,C.,andD.Casey.2004."AnInfectionControlLinkNurseNetworkintheCareHome Setting."BrJNurs13(3):166) Byron, S., D. Moriarty, and A. O'Hara "Macmillan Nurse Facilitators: Establishing a PalliativeResourceNurseNetworkinPrimaryCare."IntJPalliatNurs13,no.9():438) Cotterell,P.,C.Lynch,andD.Peters."BridgingtheGap:CanaLinkNurseInitiativeInfluence PalliativeCareinanAcuteHospital?"IntJPalliatNurs13(3):102)8. 24 Waldron,M.,F.Hasson,W.G.Kernohan,E.Whittaker,andD.McClaughlin.2008."Evaluating EducationinPalliativeCarewithLinkNursesinNursingHomes."BrJNurs17(17):1078) Charalambous L Development of the link)nurse role in clinical settings. Nursing Times91(11): Heals,D.2008."DevelopmentandImplementationofaPalliativeCareLink)NurseProgramme incarehomes."intjpalliatnurs14(12):604)9. 27 Friedewald,M Linknurseprograms:worththeeffort? HealthcareInfection14:39) Whittaker,E.,W.G.Kernohan,F.Hasson,V.Howard,D.McLaughlin Thepalliativecare educationneedsofnursinghomestaff. NurseEducationToday26:501) Whittaker, E., W.G. Kernohan, F. Hasson, V. Howard, D. McLaughlin Palliative care in nursing homes: exploring care assistants' knowledge. International Journal of Older People Nursing2(1):36) SeymourJ.E.,D.Clark,P.Bath,N.Beech,J.Corner,H.R.Douglas,D.Halliday,J.Haviland,R. Marples,C.Normand,J.Skilbeck,T.Webb Clinicalnursespecialistsinpalliativecare. Part3.IssuesfortheMacmillanNurserole. PalliativeMedicine16(4):386) Martin B& King D Who Cares for Older Australians? A Picture of the Residential and CommunitybasedAgedCareWorkforce2007.Adelaide:NationalInstituteofLabourStudies, FlindersUniversity. 22